Sponsor-A-Therapy Week – Day 2 & Day 3

Day 2:

Sunday was our last day in Gainesville. Mattie completed another 2 ABM sessions. Sunday’s ABM sessions were sponsored by two of my best friends, Roxanne Anderson and Mindy Bennett!! Mattie was pretty tired after our weekend, as you can see 🙂

Tired

If you are interested in learning more about ABM, here is a great video highlighting the ABM journey of Cypress, a boy with Cerebral Palsy.

Day 3:

Monday’s are always a busy day for Mattie. She has speech at 9am and then takes a Gymboree class. Today’s speech therapy was sponsored by Donna Ottmer. Thanks Donna!!!!

Since starting speech therapy 5 months ago, Mattie has had dramatic speech improvement. She has recently been saying 3 word sentences and her vocabulary has really expanded. Here are some my favorite quotes from her: “Where Joba go”, “Mattie farted”, “How you doin?”, “Jimi Cat come”,

We recently had a meeting with our early invention program and they approved speech therapy for Mattie. This means that the state will pick up the bill each week (until she is 3) moving forward!! Pretty cool!!

Here are some pics of Mattie at speech therapy and Gymboree class!

Speech

Gym

I was not planning on adding a video but tonight Mattie was counting her “22 toes” it is pretty cute so I had to post 😉

If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.

World Prematurity Day

Today is World Prematurity Day. I keep seeing picture after picture of so many amazing kids who beat the odds. It is pretty cool to see 🙂 Mattie was 9 weeks early, born at 31 weeks. With only a 23 days stay in the NICU, we were hopeful.

Here is a pic of Jim holding Mattie’s hand when she was 4 days old.

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In honor of World Prematurity Day, March of Dimes is offering two kangaroo plush beanies for just $20, including shipping. From their website: “We’ll send you one to keep and we’ll send the second to a family in a newborn intensive care unit (NICU). By sending a beanie, you help spread the word about the important health benefits of kangaroo care. You also bring a little bit of comfort to a family during a difficult time.”

As I look back and remember those difficult days, I remember when those little acts of kindness made the world to me. If you would like to read about the day Mattie was born CLICK HERE. The 9 weeks that followed with her in the NICU, coming home, and then back to the hospital with pneumonia follows.

Tonight my thoughts and prayers are for all the babies, moms, and dads who are currently going through this. Sending love your way. XOXOXO

Sponsor-A-Therapy Kick Off & Day 1

Today kicks off the Hope for Mattie Sponsor-a-Therapy Week. Each day we will be highlighting the therapy, who sponsored it, and a picture of Mattie.

If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.

Day 1

We are currently in Gainesville with our local ABM practitioner, Josie. We have been making these trips for almost 2 years! ABM (Anat Baniel Method) is Mattie’s main form of therapy. We have posted a ton about it so click this link ABM – to see what we have had to say and follow Mattie’s journey of learning to move.

We are grateful to have Mattie’s Nana, Ileana McCallum and one of my best friends, Rachael Garzaro sponsor todays ABM sessions. Thank you Ladies!!

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Hope for Mattie Charity Golf Tournament – October 5th

Hope for Mattie

The first ever Hope for Mattie Charity Golf Tournament and Banquet Dinner is taking place October 5th… a few weeks away!

All the proceeds raised from this event directly benefit Mattie.
Want to help make the tournament a giant success and ensure Mattie gets the therapies she needs? We need players! Help get the word out by inviting your friends, family and coworkers to participate. Individual players and groups are welcome.

 Not a golfer? No Worries! Come out for the banquet dinner and spend the evening supporting Mattie. Raffles, a silent auction and music guarantee a great time for everyone!

 Thanks to some very charitable sponsors, we have a ton of individual golf prizes to win and items to raffle off, including golf bags, golf clubs, football tickets, restaurant gift certificates and so much more!

For more details about the event or to register, click here:

Hope for Mattie Charity Golf Tournament

If you are interested in sponsoring this event, we have a few sponsorship spots left. Email us at hopeformattie@yahoo.com or fill out the sponsorship form HERE!

Mattie

Rolling Along

When Jess told me that she had signed us up for a wheelchair fitting, my first reaction was to resist. I thought up several excuses in my head why Mattie didn’t need one. She was too little-she won’t know what to do with it-we will use it as nothing more than a glorified (expensive) stroller. Then I started to think about what it meant. People would know something was wrong with her. More importantly, I could no longer deny that something was wrong with my daughter. It would be a monstrosity – a constant reminder of the difficulties we had faced and the hurdles that lie ahead. However, the fact remained that it was getting more and more difficult to transport Mattie as she continued to grow. Her inability to move on her own was also keeping her from interacting with other kids. It hurts my heart to see her lying on the ground, stuck watching her cousins and her brother run around, squealing and jumping and playing, knowing that she has no way of participating. Jess and I talked about all of this, and I reluctantly agreed to look into buying her a wheelchair.

The day of the fitting, I left work with my head full of negative thoughts and expectations. When I got home, I walked in to find Mattie sitting in a wheelchair wearing the biggest smile on her face! She was happy. Just as important, she was using it correctly-all by herself! She whizzed back and forth until she rammed into a wall or a cabinet. We would then turn her around, only to watch her take off again. It was as if she knew what she was doing. She loved it! Seeing her so happy was a shock and I immediately realized that I had thought about this all wrong. I stopped worrying about what a wheelchair meant and started thinking about all of the things Mattie would be able to do with it. She could play outside. She could play with others. She could chase her brother!

As I sit here now, I can’t wait for the wheelchair to arrive. I’m excited to have it specifically fitted to Mattie and see what she can do! This could really be a good thing for her….Sometimes a little perspective goes a long way. Check out her video from the wheelchair fitting:

Wheels

A diagnosis is not a prognosis

A diagnosis is not a prognosis. I can’t tell you how many times I have repeated this 6 word sentence. Mattie’s Neonatologist told us this when we were called into his office the day we learned Mattie had PVL (brain damage).

As Mattie grew and failed to meet milestone after milestone, I would almost chant these words in my head each time I saw her struggle to do things that she “should” be able to do. I have always believed that with hard work and perserverence anything is possible. I started to doubt these words I lived by.

How can Mattie sit, stand, or walk if her brain does not know how to tell her body to do it? Each time Mattie struggles to sit up or buckles to her knees when stood up is a consistent reminder of her diagnosis. Wait – a diagnosis is not a prognosis. So we push on. Mattie pushes on.

Then something incredible happens, Mattie accomplishes a new milestone! I think to myself, a diagnosis IS NOT a prognosis and with hard work and perserverence anything IS possible!

Until… the next time I start to have doubts and then this ridiculous cycle starts over again. But today is the day. The day that I promise myself and her that I will no longer question or doubt our decisions as far as what therapies we do, how often we do them, or wondering if we are doing enough, because I can only do what feels right to me and what feels right to Mattie. Progress is progress no matter how we get there or in what time frame we get there.

Mattie continues to prove to me that I was right; with hard work and perserverence anything IS possible! Check it out for yourself. Mattie has learned to sit up on her own!

Mattie Sits

Run for Hope

To check out pictures from the 1st Annual Run for Hope 5K – Click Here!

I will admit that the few days leading up to race day, I was nervous, stressed, and driving everyone crazy, namely Jim. I had been up till 1am for almost 6 days straight working on the details and getting everything ready, but the lack of sleep was starting to effect me. Yet on race morning, I woke up feeling energized and ready to run myself 🙂 I was excited to see how the day would turn out.

We had 140 registered 5k runners going into Saturday and not really sure how many more people would come and register the day of. We also had 36 1-milers registered. We surpassed our goal of 125 so I was excited.

Mattie was the star of the day getting her photograph taken with the runners and meeting all the amazing people who came out to run in her race. The morning went by so fast. Before I knew it, the awards were given out and we were cleaning up. The feed back we received was great. We also had some great advice given to us for next year’s race.

Here are our final numbers:
168 – 5K Registered
49 – 1 Milers Registered

We were able to raise a total of $5,160, over $2,500 more than our goal. You can’t even imagine just how blessed we feel. It looks like we will be heading back to California sooner than we thought! With the results we are seeing everyday with Mattie, I just know that even more progress can be made with another trip on the horizon.

We owe a huge thank you to Mindy and Jennifer for coming up with the idea and moving forward with it. If it was not for the two of you, this day would have never happened. To everyone who sponsored, volunteered, ran, walked, supported, donated and just sent good thoughts our way…thank you for supporting our family. YOU are the reason for Mattie’s progress and we will forever be grateful.

With love and hope,
JJJM

HFMC

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Run for Hope Sponsors

Moving Forward – Our Cross Country Trip

Jim, Mattie, and I recently got back from our 9 day trip to California. This trip has been in the making for the past year. The main ABM Center is in San Rafael, just north of San Francisco. Since starting ABM 15 months ago, I knew that we just had to go out there to meet Anat, the founder of ABM, and her top practitioners. This trip was made possible by all of YOU! All 10 ABM sessions and lodging were paid for with donations made to Mattie in the past 6 months. This trip happened because of the amazing outpouring of love and support that had been shown towards Mattie.

Here is a recap of our amazing trip:

Saturday and Sunday

I am catching up on emails as I wait for Mattie to wake up from her nap. We have been in CA less than 48 hours. Last night Jim was in the tub with Mattie giving her a bath. Since we could not bring our special bath tub across the country, one of us has to get in the tub with her to hold her up. This is always uncomfortable and scary for her since it is awkward positioning and she has to rely on us to make sure she is supported. As I am washing and Jim is holding, I glance up at Jim. He had been looking at me. He says “how did we get here?” I give him a half smile and don’t respond. There was nothing to say. The answer is in our eyes, in our heart, and soul and only we can see it. Traveling around the country to get the help Mattie needs has been a constant normal for us. Every penny we save goes to fund these trips. They are not trips meant for fun but the sole purpose of these trips is to give Mattie the ability to move, walk, sit, stand, and run. Something I used to take for granted. We have a mission. We will do everything in our power to help her become the best she can be, no matter the sacrifice. I have come to understand that is the true meaning of selfless love.

We had an opportunity to walk the streets of San Francesco yesterday. Both of us saying how much fun it would be if we came back, just the two of us. I tell Jim that I could never come back without Mattie knowing the ABM center is just 30 minutes away. Then Jim says he believes that one day when we retire, we will be back and Mattie will be independent and we can go on real vacations not therapy trips. Then he asks if I feel the same way and I tell him “I never thought about it”. I tried, at that moment, to imagine it. A time with no kids, no therapy, being carefree and… I couldn’t picture it. Then I realize that I have become so consumed with helping Mattie, that I forget what life would be like if it were… ok I am not going to go there since that is not reality, so I made a mental note to add San Francisco back to the bucket list and another note to go on a much needed adult get away very soon!

Daddy and M

Mommy and M

We headed down to San Jose later that afternoon. This would be our 2nd city on our ABM trip. Mattie’s first 2 sessions would be with Andrea Bowers. I was very excited to finally meet Andrea. She often posts great articles and awesome advice on the ABM FB group and her site. She had a son with CP who is in his 20’s so she always has great insight about being a special needs mom in conjunction with doing ABM. The 2 sessions went great. Mattie seemed to really like Andrea and we saw some great movement come out of these 2 sessions.

After the sessions were over we hopped in the car and headed to our final city, San Rafael. We were able to get a great deal on a rental house, thanks to the owner being very kind and generous. The house was going to be the perfect place to spend the rest of the week. Mattie would have her own room, be able to roll around and get lots of floor time. Jim and I would be able to cook dinner every night (a BIG money saver) and just hang out and catch up on life, since Mattie’s bed time is 7pm.

Monday

The next morning we headed to the ABM Center. I was not sure what to expect, but I knew I was really looking forward to meeting everyone!! As we waited in the lobby for our first sessions, Anat Baniel came out of a room and introduced herself to Mattie. I was very excited to finally be able to meet the woman behind the AB in ABM and who we have entrusted with helping Mattie learn to move. We would have 2 sessions with Anat later this week!

Sylva and Neil were our practitioners for our first day at the Center. They were both fantastic and Mattie seemed to really like them. By the time the 2nd session was done, Mattie was toast. She went to bed at 6:30pm she was so tired from all the learning. So far 4 sessions out of 10 were completed and we both were very happy with the progress and changes we were seeing in Mattie. Yea!!!! Now what were Jim and I going to do for the rest of the night… Netflix and a bottle of wine seemed fitting 😉

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Tuesday

Today is the day we get to have an hour of one-on-one with Anat. I am so excited to see how Mattie responds to her!! I have heard stories from other moms about Anat but I was in no way prepared for what was to come. Jim and I left there feeling like our minds were blown. Anat had a ton of great insight on me and Mattie in just the first few minutes of meeting us. She thinks I help Mattie too much and talk for her (which I do) but to have someone who does not know me point it out made it clearer in my mind just how much I assumed I knew what Mattie wanted. At first when a yes/no question was posed to Mattie she would look at me to make a decision for her. When I would not do it, she seemed confused as though she had no idea how to respond since we never ask her what she wants. It was really eye opening. The first part of the hour was spent with Anat working on Mattie and the last 20 minutes was more for Jim and I. By the end of the hour Mattie was answering yes or no to everything. It was pretty incredible. I did feel like it was more of a psychological session with Jim and I more than a movement lesson with Mattie. It is going to take some time to wrap my mind around what was said. I hope that the Thursday session with Anat is more focused on Mattie’s movement.

Wednesday

Our only day off! We decided to head to the golden gate bridge and walk across it. It was raining so the pics we took were not great but it was pretty cool. Later that afternoon we headed to a winery near Napa. Jim and I both love wine so we were excited to visit a real winery. It was still raining so we were a little bummed about that but we all had fun. Even Mattie!

Bridge

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Thursday

Today’s session with Anat was amazing! It might have been the best ABM session Mattie ever had. Anat made it a point to really push Mattie to show just how capable she is. She had Mattie doing all sorts of new things, from pulling to stand, to twisting her body by using her lower back. It was great to see Mattie responding so well and it was obvious she liked showing off her new abilities. Anat thinks Mattie has immense potential (there’s that word again!) and it was very encouraging to hear that we are on the right path.

Nice Back

Friday:

Mattie is burned out. We knew that 10 sessions would be pushing her but we thought with a day off in between that she might have been able to handle it. Ummm not so much. Take a look at those eyes.

Tired

She is fried!!! Today’s sessions were not fantastic but Mattie was still a trooper! Overall I am very happy with small changes we are seeing in Mattie. She is holding her back up straighter and talking a ton more. She has learned to answer yes and no for what she wants. She has been great this entire trip. I could not be more proud of her.

Saturday

We leave to go back home today. I think we are all ready to get back. I have missed Joba more than words can even describe. Joba stayed with my sister for a week and then with his grandma’s the rest of the time. He did really well while we were gone. I do know that I can never leave him for that long again. Every time I talk to him or Skype him, my heart hurts knowing how far away we are from each other.

Anat and the practitioners at the ABM Center believe Mattie is on the verge of a break through and want to see Mattie back in California every 3 weeks for the next 3 months. As much as I wish it was possible, we just can’t afford to come back that soon or even in the next 3 months. I really feel like this trip was a success but at the same time I am left feeling anxious and guilty that we can’t follow the plan they want for Mattie. It really is an unrealistic plan but I am still racking my brain on how we could get back sooner rather than later. We have come up with the best alternative plan that is doable for now. We have decided to go to Gainesville every 3 weeks for 6 sessions of ABM and continue to see our Sarasota ABM practitioner in between.

Today
We have been back for a little over 2 weeks now and until yesterday I had no real progress to report on Mattie. I know that Mattie needed time to process everything she learned in Cali. So the past few weeks have been relaxed for her with no travel and lots of playing on the floor time. Then (drum roll please) Sarah, Mattie’s super fantastic nanny, says that Mattie used her ARMS to move FORWARD all by herself. So, you may not think this is a big deal, but it REALLY is a HUGE DEAL. Mattie, for the first time ever, moved FORWARD. I am just amazed. I saw it with my own eyes today. I have been crying on and off all day every time I watch the video.

Please click HERE to see this amazing achievement

This, my friends, is what I call success. This is why we believe in ABM. This is because of you. Thank you from the bottom of my heart.

Run for Mattie

The Run for Mattie Team just completed the Gasparilla ½ Marathon on February 24th. Our Fund-Racing team for this race consisted of 7 members who all worked hard to “Run for Mattie”. As a team we raised over $2,500 for this race. We were just amazed at the generous donations that kept pouring in and actually continue to come in. Again, I am left with no words to express just how grateful we are to have such amazing friends.

Running 13 miles for Mattie is an experience I will never forget. In just 3 hours, I went through such crazy emotions. I have been asked how the race went and all I can say was it was good and bad and emotional. I will not lie; I have never run 13 miles before. The best I could do to train for this was 4 ½ miles, so going into Sunday morning I was really nervous but excited at the same time. Jim promised he would run with me. I know that was hard for him as he has run ½ marathons before and can run them in less than 2 hours. My goal was under 3 hours. The beginning went really well, probably too well. Between mile 4 and 5 we started taking walking breaks but we were running more than walking. Around mile 7 I told Jim “I can do this”. At mile 10, Jim gave a pep talk and I was motivated to finish it out. We were on track for 2 hours 40 minutes… then my body took over and gave me the middle finger. I was done. I was cramping, I had the chills, I was hungry, and I started crying. I was a done deal. Mile 10 took us 22 minutes to complete. Then Mindy texted me that she saw a sign that read “Kids with cerebral palsy think running is a gift”. The tears came again and we pushed on. When Tasha handed over our Run for Mattie banner as we were about to cross the finish line, tears came poring out. So, it was not pretty, almost pathetic really, but who cares. I did it. I did it for my beautiful daughter, Mattie, in hopes that she will one day realize that I would do anything for her.
Here is what a few of the Run for Mattie Team said about the day:
“I was so honored to be able to help you guys in any way that I can. It definitely was an emotional experience due to the fact that I almost cried in mile 1.”
“It was truly the most meaningful and emotional race I have ever run. I am so glad I was able to run it with everyone. It really touched my heart to have Mattie as my motivation throughout training and during the race. I was so blown away by the generosity of my friends and family too. I have always known I have been blessed with such great people in my life, but to see them all answer the call, when I asked them to, still had me in awe. I am so grateful to have been able to help Mattie and as with all things in my life, I wouldn’t have been able to do it without the support and love of my generous family and friends.”
“Running this race for Mattie was an amazing experience. Running is an ability so many people take for granted and my hope is that one day my sweet niece will be running along side of me. It was such an honor to be part of Team Mattie!!”

Here are a few pics from the race.

Run for Mattie

Run for Mattie 2

Team Mattie

Team Mattie

The View on the Run

Our Bling!

A very amazing friend put together a Raffle for Mattie recently. We were raffling off a personalized signed game day jersey from Rob Gronkowski, the New England Patriots tight end. With 115 entries into the raffle, the winner was Ian Baxter, who by the way, is a huge Patriots fan. Ian had the shirt personalized with his kids names 🙂 Too Cute! Click this link to see Mattie pull the winner:
http://youtu.be/F9Qm87yGCUI

Signed Jersey

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The past few ABM sessions have gone exceptionally well! We could not be doing as many sessions if it were not for all of you. Mattie has a big 5k race coming up, Run for Hope. Have you checked it out? All of the proceeds from the race will continue to fund Mattie’s ABM sessions. If you can’t be there April 27th, please consider donating or becoming a sponsor, we still have a few sponsorship spots available.

Run For Hope

I know I have said this a hundred times… but… we appreciate the generosity shown to our family. You guys rock and with your support, Mattie is going to go far!

The dreaded 7 letter word

We had to take Mattie back to the eye doctor last Tuesday. I had noticed that she was losing focus and her left eye was turning outward on occasion. Dr G assured me that her eyes looked fine and the outward turn would improve as her eyes adjusted to the new position and got stronger. Then… the seven letter word that was about to turn our life upside down was said…seizure. As soon as Dr. G said it, I knew instantly. It was like my mind started to replay the past 5 days and what I thought were periods of “not focusing” very well could be seizures. I was shocked, although I am not sure why. We knew there was always a chance Mattie would get seizures. It is very common in kids with CP, 45-65%. Although I knew we were not out of the woods by any means, I had pushed that word completely out of my mind.

As soon as I left the office, my first call was to Jim. Could it have been this past surgery? Did they use a different anesthesia? Was she under for too long? Did she have a bad reaction to a medicine that was given to her? Why now? We started her on a mineral supplement 3 weeks prior to surgery, could that have been it? A million questions raced through my mind. I called Mattie’s neurologist and we scheduled an EEG the next morning.

I went back to work and was numb the rest of the day. That night I finally got the chance to “Dr. Google” and I finally broke down. I felt like someone punched me in the stomach. Seizures. Epilepsy. Are you kidding?? I was devastated. Can’t she ever just catch a break? I can’t even wrap my mind around what this means. I try to remember what gets brought up on the CP boards I follow, ER, meds not working, meds making the kid crazy, lack of attention, cognitive development slows…crap.

The office EEG came back normal. Later that day Mattie had another staring spell. The next step was to do a 24 hour EEG. The neuro scheduled it for Friday. We would have to spend the night at the Children’s Hospital. Mattie did fairly well, considering we were stuck in a room and I could not put her on the ground to roll around (which is where she spends the majority of her time) and she had 30 electrodes glued to her head. I on the other hand could not sleep and by the time Mattie woke up, I was a mess. The entire time I never saw a staring spell or seizure. Now it had been going on 3 days of not having one.

Twinkle

Get this off me!

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Dr. G finally came to talk to me around 11:30 Saturday am. At this point, I was expecting a result of everything is fine so I was not really concerned that Jim wasn’t there. We didn’t catch anything so I did not even bother doing any more research. I really began to think that it was a coincidence and even thought to myself that our neuro was going to think I am some over-paranoid mom… but was I???

“Mattie is having abnormal brain activity while she is sleeping”

I was completely taken aback and felt unprepared for this. Apparently there is a chance that she will have a seizure while she is sleeping and what we have been noticing are most likely seizures, although she did not have any staring spells while we were being monitored. I hear the words seizure meds, epilepsy, right side of her brain, abnormal… and I kinda go in shut down mode. I am trying to remember what I should ask but Mattie is crying and everything is a mess…

As I sit here and try to finish what I want to say about this, all I feel is sadness. My heart hurts for her because all I want is for her to live the best life possible. I am so worried about these meds and how it will affect her. Mattie has really come so far the past few months that I feel putting her on a seizure med will be a step backward. I feel like we are so used to getting bad news that my emotions go from crying to survivor mode in a short amount of time. There is no time for crying and sadness. I have to be brave and strong for my little girl and figure out the next step.

When Jim and I were finally able to do some research, we decide another call to Mattie’s neuro was in order. We had a ton of questions that I was not prepared to ask at the time he gave me the news. We also agreed before starting any meds, we would get a 2nd opinion. We gave Mattie’s neuro a list of questions today and were told he would call us this evening.

Jim and Dr. G talked for awhile tonight. We expressed our concerns about starting her on meds, the side effects, and the fact she has not had any seizures in the past 5 days. The final outcome was holding off on giving any seizure meds at this point. We are to watch her closely and see if she has any more absence seizures. If she does then we will have to start the meds. I am relieved but am still left feeling unsettled with the sudden change of direction. It never stops, the analyzing and re-analyzing, but for tonight I have the answer I wanted and I will leave it at that… until tomorrow 🙂

We appreciate all the messages, good thoughts, and prayers (more than you know). We have an amazing support system and could not do this without you. Thank you from the bottom of our hearts.

 

Look at these eyes!!Cookies!